Peanut585

Hi, I’m in similar situation. Waiting for confirmation of Fibro but doctor thinks I may also have polymyalgia or at least an element of it due to inflammation markers. So I am currently on steroids for polymyalgia which seems to help lower inflammation. I was in 20mg but had bloods redone and as inflammation lowered they lowered my steroids to 15mg for a month and then have more bloods. Then see how I feel overall and if still ok and inflammation lowered again he said they will look to reduce steroids again but if I don’t feel right then may leave me at 15mg.

Misslovely in reply to Peanut585

At least theyre trying to help you out!

I hope it works out for you

Its hard to get a GP to listen and not fob you off!

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Peanut585

I know what you mean as I first went to doctor about pains 2years ago. So slowly getting there with them! Hope you get the support needed yourself x

Robbie138

I’m changing my GP as I never get results from them. Things have only came to light that my blood has been all over the place because I’ve had to go to hospital for another condition I have. The consultant was going through things I had wrong with me, and I said I don’t have that to which she replied oh am I telling you something you don’t know about 🤬. Also I had to get an examination in Drs which was done about a year ago so I said I’ve never got the results I’m fed up of you writing to me to get my blood taken and no results. A few days passed and I got a letter saying they have no record of the test taken place and can I think about it and let them know when it was 🤬🤬 I can go on about my GPS but will spare you all.

Hope everyone is as good as can be.

🤗🤗xx

Misslovely in reply to Robbie138

Oh god! Mine arent that bad at all

Just sometimes feel that i get fobbed off as he said id sprained my ankle but i know i havent as the pains and burning sensations and stiffness i have jn it, ive had in over 18 months !

Hope you get it all sorted x

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Robbie138 in reply to Misslovely

Oh my Misslovely, a sprain 😱I honestly think Drs now don’t really care, you should see another Dr in practice see what they think xx

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Misslovely in reply to Robbie138

Yeh i went to see a different GP at the practice and he ordered the blood test so hopefully theyl take it seriously and not just fob me off again!

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Dinkie

Could be one of a number of things, from not enough blood for the number of tests they want to do, to wanting to do a blood test after you have fasted overnight to rechecking calcium levels. The possibilities are endless so I really wouldn't worry about it. I make a point of only worrying about things I can change not things I can't! Phone on Monday and ask them exactly why you need further tests. Sometimes results take longer than a day. I don't get my blood test results for at least a week. Please try not to worry it's more than likely a simple explanation.

Mydexter in reply to Dinkie

I was going to say I never get my bloods back for at least a week, never the next day

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Dinkie in reply to Mydexter

We have to phone at specific times for blood results - the receptionist told me the last results were fine, then two days later the doc phones and says "umm you need to come and see me to discuss results as the calcium is high"

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Mydexter in reply to Dinkie

Wow that's worrying isnt it, why would she say they were fine when they weren't 🤔 Yes we have to phone after morning surgery.

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Dinkie in reply to Mydexter

Yep very worrying so I now ask to pick up a copy. Not that I know what I'm looking at but I can compare with the old ones and if anything is different I can phone and ask the question.

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Mydexter in reply to Dinkie

Good idea 👍

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M0AL61Moderator

It could well be that your levels of inflammation were slightly raised so they want to see what they are like in a months time.

I get this all the time - a letter or phone call to repeat my bloods. Sometimes - though they won't tell you this - it can be that the lab has lost your sample, or that the paperwork on your sample hasn't been completed properly - name missing, form not filled in properly so the lab don't know what test to do etc. In cases like this - unless your blood test was urgent - they will just ask you to repeat in a months time, without telling you that they have made a mistake somewhere along the line. xx

Misslovely in reply to M0AL61

🙄 i know we all make mistakes - its a human trait, but if thats the case i wish someone would just say “sorry, weve made a mistake could you pop back in”

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Rose54

Hi

Most likely to see if inflation markers have raised from the last blood test . However you can have Polymyalgia without raised markers only way of knowing for certain is short course of steroids if you respond to these you may have PMR

GrandmaDylan in reply to Rose54

I have had fibromyalgia for about15 years and about 3 years ago I felt that it was worse than ever. I mentioned polymyalgia to my gp and he said that we'd try the steroids to see if they helped. Wow, I felt fabulous. I could walk up and down stairs with ease and walk for quite long distances. Then came the negative side effects. Weight gain, feeling really hot all the time but worst of all it made me an insulin dependant diabetic. I gradually came of the steroids but I wish that I'd been warned about the repercussions and I'd never have taken them. As soon As I stopped them my symptoms came back and I'm back to struggling with stairs and can't walk far. It's obviously your decision to try the steroids but ask about the side effects. Deb

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Misslovely in reply to GrandmaDylan

Thanks for that!

I definately dont want to gain weight as i am a couple stone overweight and dont want to put more on as that just exacerbates it! xx

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Rose54 in reply to GrandmaDylan

Hi

Yes Steroids do have side effects but can be managed

I have been on them for 3 years its about quality of life being independent or totally dependant on others .

For PMR its the only treatment

After suffering for 3 years I was unable to get dressed or undressed , shower ,brush hair or even wipe my own backside .

Started Steroids and I was independent once more .

Left untreated can cause lots of health problems and if develops into GCA possibility of blindness.

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Mydexter in reply to Rose54

Yes that's the problem with steroids the side effects , it's balancing the pros and cons, though saying that my Mum was put on steroids years ago for pain and I think she was the only person I'd heard of who actually lost weight!!! Mind you her appetite didn't increase while she was on them either, which is what steroids do, so maybe that was it, it's a difficult decision.

I've just had blood tests for inflammation which came back normal, but the pain in my shoulders is unbelievable, how do you get your dr to try steroids though as most of them go on the blood test results

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Rose54 in reply to Mydexter

Hi

Is your pain bilateral stiffness worse in the morning looseness up during the day and returns when you stop .

You would just ask your GP if thay would consider a weeks course of 15mg Prednisolone if you get 80% relief within 4 hours that would indicate you have some sort of inflammatory disorder but remember thier are a lot of them.

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Misslovely in reply to Rose54

Hi Rosie54

Theres no pattern as such

It can be really stiff in the morning and loosen up a little, but sometimes it seems fine in a morning. It can hurt all through the day whether i rest it or walk on it or do some actual exercise! All i know is it is progressively worsening as time goes by and it started over 18months ago in my ankle!

The pains in the rest of my body ive had since i was a very young child

Ill be having more blood tests soon so shall see what comes of it !

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Mydexter in reply to Rose54

Yes Rosie pain in both my shoulders but not really stiffness,or in the morning, it's more after. I Do something, and it's better if I rest or put heat on them, or if I massage the muscles, I'm going to ask Dr if doesn't get better, thanks

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Rose54 in reply to Mydexter

If theirs no stiffness in the morning it does suggest its not PMR

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Mydexter in reply to Rose54

Mmm, that's what I thought, thanks for that, hope you are well (ish 😃)

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Cherylvit

Misslovely, sounds to me that your inflammatory markers are a little elevated but just a little and your doctor just wants to follow up to see if it moves or stays the same. Either way your doctor isn’t too concerned about only enough to recheck in a few weeks. Just schedule your blood draw and follow up appointment to discuss your inflammatory markers. I think 🤔 mine are a little elevated too.

Misslovely in reply to Cherylvit

Oh i hope you get sorted! Xxx

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Cherylvit in reply to Misslovely

Thank you 🙏 I hope yours gets sorted soon. My kidney functions trumps the inflammatory factors because it has been off for over 2yrs now chronic renal insufficiency so been keeping an eye on that but it has been moving towards the normal range. 😊💕🦋🌸🌿🤗

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Misslovely in reply to Cherylvit

Fingers x for you that youre sorted soon too ! ❤️

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GrandmaDylan

My inflammatory markers have been off for years but as I have fibromyalgia, under active thyroid, OA and various other health problems it's not really been investigated. I've now been diagnosed with cirrhosis of the liver although I don't drink.

jackiesj

Sometimes they find out they dont have enough blood or that asecond test needed to confirm the first.Wating 2 weeks gives them a better idea if it changes..best wishes!